You have probably heard a lot about ‘Care Considerations’. These were the first Standards of Care published in 2010. The purpose of developing Standards of Care is to ensure every person living with the diagnosis of Duchenne knows what good care means. But it is more than that. It means that standardizing care enables us to learn more about Duchenne and its progression and apply those learnings and use that knowledge to help individuals with Duchenne live longer and healthier lives.
This year, the Care Considerations have been updated because individuals with Duchenne ARE living longer. We have learned a great deal since 2010 and the changes you will notice include recommendations for adults with Duchenne.
The publications in Lancet Neurology are available and can be accessed, but reading these academic articles can be overwhelming! For this reason, we thought it might be helpful to write a Guide for Families. We know families are juggling so many things and we hope that you will find this version easier to manage.
In a collaborative effort with our partners – the Muscular Dystrophy Association, Treat NMD and the World Duchenne Organization – PPMD led the development of a Guide for Families (download) which can be used in different ways. You might find it easier to focus on a specific stage of Duchenne, or it may be more helpful to concentrate on a specific area related to care, such as steroids, cardiac, etc. We are hopeful that you will find this a useful tool for everyone you are in contact with along this journey – parents, grandparents, teachers, physicians.Download the Guide for Families (PDF)
Additionally, PPMD has partnered with Treat NMD and the World Duchenne Organization to update The Imperatives of Duchenne MD (download). This is a one-page document that outlines comprehensive care for Duchenne. This is an incredibly useful tool for medical providers who may not know much about Duchenne.Download the Imperatives (PDF)
For reference the 2018 Lancet Neurology articles can be downloaded and shared with your neuromuscular team:
- Part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management [PDF]
- Part 2: respiratory, cardiac, bone health, and orthopedic management [PDF]
- Part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan [PDF]
We hope that you will find this updated Guide for Families to be a useful tool in your arsenal. This is a living, breathing document that will continue to be updated and tweaked. But it should give you a jumping off point and the confidence to speak up on behalf of the person in your life living with Duchenne. Quality care is vital in the fight to end Duchenne.